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Wednesday, August 15, 2007

Julia's Story

A few weeks ago, I spent a lot of time at a hospital in Boston visiting doctors with Julia. At this time of year, with her birthday rolling around, I think about what our life was like nine years ago in July.

I became pregnant when I was 39 years old – no bells, no whistles, just naturally pregnant and totally surprised. I had never really wanted to have children – being the oldest child in a large family did me in. I was always the responsible one looking after my four younger sisters. Looking in, motherhood didn’t appeal to me. The Farmer was apathetic about children also. He thought we were too old, too busy, too set in our ways. When I became pregnant, we decided that it wouldn’t be so bad – it would be a new part of our lives together – a new undertaking and beginning for us after being married for fourteen years. Heck, how hard could it be – we took care of plenty of animals, how different is a child?

Three weeks before our baby was due, my doctor sent me for an ultrasound, thinking that the baby was breech. I went in after work and met a friendly ultrasound technician. I lay on the table and she told me the drill – I should be out of there in a flash. No need to drink a lot of water – the baby was big enough that it wasn’t necessary. I lay there for 45 minutes, while she poked and prodded and added more and more jelly to the wand and kept prodding. I asked her what was wrong and she said nothing, she just kept moving the wand and taking more images. I didn’t know what to think and went home puzzled.

The next morning at work, I got a call from my OB-GYN that I should go to the hospital in Lowell to see a specialist from Boston. I called The Farmer on his cell phone and he rushed to Lowell. The doctor from Boston told us the ultrasound had found a problem with the baby. He suggested another high level ultrasound and an amniocentesis since I hadn’t had one before.

My pregnancy had been normal and easy. We were devastated. I lay on the table as they did a high level ultrasound. The doctor was straight with us, showing us the baby’s brain and discussing the implications. The baby’s head was extremely large and the ultrasound showed that the brain was full of liquid, that there was no brain tissue that he could see. He did the amnio and we met with a geneticist after. They were specialists, but could tell us nothing because they weren’t brain specialists. The amnio would tell us if there was a fatal genetic condition such as trisomy 18 which was what they suspected.

For the next few weeks, everyone told us the same thing – you’ll have to wait to see what happens when the baby is born. We spent very long days and evenings trying not to think about what lay ahead for our unborn child. I concentrated on my responsibilities at my job, editing knitting patterns for the upcoming fall season. We went to a lot of movies. I ate a steady diet of ice cream for three weeks and lost weight over the worry. I lay on the couch and cried. The baby began to hiccup and I lost my mind with sadness.

About a week before the baby was born, we were asked to go to see a neurosurgeon at New England Medical Center named Dr. Carl Heilman. We arrived at his tiny office on the top floor of NEMC. He was younger than we were but seemed smart, capable and mostly kind. He told us a radiologist saw some small activity in the ultrasounds of the baby’s brain but that most of the brain was filled with water. He didn’t know what was wrong with the baby but he told us there was a chance the baby had severe hydrocephalus and that a shunt could be put into the skull and that the water would drain off. He made no promises about the diagnosis being correct or not. When the results of the amnio came back, the doctors would know better.

A c-section was suggested because the doctors doubted I could deliver the baby vaginally. Before the date was chosen or the amnio came back, my water broke on a Thursday evening and I went into labor. We drove to Boston, expecting the worse.

We arrived very late in the evening and met an OB-GYN named Sabrina who seemed to be waiting for us along with her resident assistant. My sister Laurie was there also. The doctor told me I could try to deliver the baby vaginally. After a split second, I screamed “just get the thing out of me.” My sister told me she was relieved I opted for surgery.

I had a spinal and screamed at the anaethesiologist. Any manners that my mother had taught me had been thrown to the wind. I lay on the table as they cut me open, The Farmer by my side, him watching the whole operation. The room was full of people from the NeoNatal ICU, an anethesiologist, two OB-GYN and several nurses. I remember counting 15 people not including me and The Farmer. The whole thing is a rather large blur to me. I remember them tugging and lifting the baby out of me. Noone told me what it was – I asked and they said it was a girl. I lay there crying, not wanting to look at the baby, thinking she would die, trying to forget the whole pregnancy. They whisked the baby to the NICU and I went to the Recovery Room.

I have never been one to plan ahead. Even when I found out I was pregnant, I didn’t purchase anything for the baby. I didn’t decorate a room. I was baffled by talk of diaper genies and diaper services. I wouldn’t decide on a name until I knew the baby was born and I met it. As I lay on the table I mourned the child who would never be, the little girl I had called Gwen in my mind.

For two days, I stayed in my hospital room, drugged on painkillers, hitting the pain button incessantly, trying to make the whole situation go away. My Mom and Dad came from NJ, my sisters and some friends came from far and wide. The Farmer spent most of the time in the NICU, giving me little reports on the baby who was still nameless. He told me that if she was going to die, she should be loved. I just thought of all the love and nurturing I gave her in my belly and wanted the whole experience over. My sisters told me we really should name her. The Farmer and my sister Laurie decided on Julia and I went along (it had been on the name list – that’s one thing I had done).

My friends Sally and Missy came to visit and I decided I had the strength to physically get out of bed and meet the baby. They wheeled me down to the elevator and then to the NICU. I still remember the fear I had of what I was going to find.

There, attached to wires, computer monitors, and dressed in a little undershirt and a diaper was Julia with the largest head you could ever imagine – spongy with the cerebrospinal fluid that wasn’t draining through her ventricles to her spine. Underneath it all, she seemed alert. She had long, long eyelashes, long fingers, and the cutest little nose. Her eyes looked around. She was happy. The nurses had nicknamed her the queen of the NICU. I fell in love and I knew we had to do what we could do to make her happy.

On Monday, things happened quickly after all the specialists came back to work. Julia had test after test, CT scans, MRI’s, blood work, you name it. We met neurologists, nurses, pediatricians, toxicologists, and then re-met Dr. Heilman. After all the tests came back, Dr. Heilman suggested surgery on Tuesday to place a shunt in Julia's brain to help relieve the severe hydrocephalus she was ultimately diagnosed with.

That day, we got up very early and The Farmer wheeled me down to the NICU. The nurses had prepped Julia and she went off to surgery. We waited in my hospital room. Dr. Heilman came in after surgery and said everything went fine.

Doctor after doctor visited me in our “hotel room”, interviewing me, trying to determine what caused Julia’s condition. NEMC is a teaching hospital so you tend to meet zillions of doctors and residents. It is a great place and we continue to visit many of the specialists there to this day. In the end, the doctors couldn’t determine anything that would have caused her problem – her condition was the luck of the draw. (Dr. Heilman told us that about 50% of hydrocephalus cases occur for no determined reason.) The condition would not have shown up on an amnio. If I had known about it, would we have done something different? I don’t know. I don’t remember feeling as if I did something wrong to cause Julia’s condition, I just felt curious. I was a healthy pregnant woman – I tried to do everything right but then you can’t control things, can you? I certainly learned that lesson.

Julia stayed in the NICU for ten days. We met with plenty more doctors and as many times as we asked what her functions would be, noone would give us an answer. We took her home to care for her and to love her. In the next eight months, she had 3 more surgeries. Seven more surgeries before she was five. That first year is pretty much of a blur. Any normal mother’s first year with a baby is also a blur but mine really was. Just when Julia seemed to be doing well, we would find out she needed another operation because of the condition in her brain.

Julia never crawled - she scooted on her bottom. She didn’t walk until she was three years old. She will always have a shunt. The miracles of science right now cannot correct her problem totally. The condition has mostly affected her occipital lobe – the part of the brain that controls all her movement, math skills, and fine motor coordination. Luckily, she doesn’t have many of the other conditions some children with hydrocephalus have.

Would I chose to have a child with a disability? No, I wouldn’t. When I hear a baby has been born, the first thing I ask is if it is healthy. I overhear young mothers complaining about some little problem with their infant. I resist the urge to tell them “you don’t know how lucky you are, how small your problem is.” I also know how fortunate I am to have Julia in my life - her disability which may seem sad to many - is okay - we know it could have been much worse. We are very fortunate.

Would I give up being a mother to a child with a disability? No, I would not. Have I learned anything? Yes, more than I want to know. Having a child with a disability changes your life just as having any child does, only differently. As Julia grows, with each year, I learn new things about her disability, about her learning skills, about what we can expect of her and about what we should be patient. I know about EI (early intervention), IEPs (individual education plans), about neuropsychologists, neurosurgeons, neurologists, about PT and OT, about strabismus, the list goes on and on.

With each year, we have new challenges. People ask me, when they know what I do (knitwear and stitchery design), if Julia likes to knit or sew. I say no without an explanation. I am so proud of what my daughter can do with the tools she has been given. It took her physical therapist a year to teach her to throw a ball. She still can’t ride a bike. Tell her to move to the right and she’ll look at you like you have three heads. Eventually I hope she will get it, but it will take a while for her brain to process a command. Can she sew? Not yet and she may never be able to. (Her OT worked with her on it for a year and I told her to give up on it for now.) Does it make me sad? No, it really doesn’t. I wish we could enjoy some of the same things, but I can’t worry about it. Julia appreciates what I do and is interested in my work, but sewing and knitting won’t be for her and that’s okay.

Can Julia read and write and talk? Happily, yes, with gusto. Is she personable and friendly? Yes. Is she a happy child? Yes, very. She loves pretty clothes and handknit sweaters, she is great with animals, she is kind and loving and compassionate, she is articulate. She thinks doctors and nurses and everyone in the healthcare world is wonderful (as they are!). We go with her strengths and she’ll find her own interests and we’ll nuture them.

I think of the changes Julia has made to my life. If she had been born a healthy child, I probably wouldn’t be living here at our farm full-time. I probably would still be working at a demanding job, feeling stressed to the max that I wasn’t taking good care of my child. I would not have decided to slow down my professional track and try something new like writing books and freelance design, something that fit in with my new family life. I wouldn’t have raised pigs. I would still be running like crazy, missing out on the little things like class trips, spider webs, slugs, frogs and tadpoles. I wouldn’t be writing this blog.

I write this, our family’s story, so that other mothers with children with a disability of some kind know that there are others out here dealing with the difficulties of raising a different kind of child. I write this so that women who have teeny little problems with their kids realize they are very lucky. I write this to tell you that, mother or not, you too can deal with the curves life throws you. The outcome may not be pleasant and happy, but life goes on.

Take the challenges that life brings and try to learn from them. I do not mean this lightly – life brings many challenges along the way. Find solace where you can. And if all else fails, pick up your needles and knit and sew and stitch and create. It will help get you through your worries.

68 comments:

That's a beautiful post, Kristin. Thanks for sharing your very personal story. I'm not a mother yet, but hope to be some day. And I only hope that I can have even an iota of your grace. Happy Birthday to your little girl.

I'm so glad you had Julia and shared this story. Thank you.My grandmother was a Julia, and my eldest sister is named for her. Good women.Another sister of mine who lived in Holland for a few years told me recently that there, when it is someone's birthday, you don't just congratulate that person but their entire family as well. So congratulations to ALL of you and Many Happy Returns of the Day.

Your blog speaks to me in so many ways. Thanks for sharing this story. My youngest daughter was born with a life-threatening birth defect. It was touch and go for quite awhile but happily with few long-lasting effects. It changed my life as well--I gave up my fast-track career and have tried to find a more balanced life for my family. Your post gave me great pause as I tiptoe toward full-time work with some trepidation!

Thanks for sharing Kristen. What a blessing it will be to those struggling with the same things. We need to hear stories like Julia's, otherwise we get to believing the lie that we are the only ones going through these struggles. Not matter what the situation we should all follow your lead - "We go with her strengths.." We should put that into action for ourselves and our children no matter what their situation is. We are all unique and we each have a unique purpose.

thank you. i was born 3 months premature and spent 98 days in nicu -- 28 years ago. there aren't many lasting "effects" to my early birth. my husband and i are starting to think about children.. i'm scared beyond words and need to say thank you. i needed this post today. i thank you very much for sharing your story.

Thank you for blessing us with your post today. A few minutes ago I was irritated with my 13 year old for leaving his tennis shoes in a neighbors car after football practice last night. Your advice echoes my mother's when my sister asked her how she survived our teen years....."Just concentrate on what you have control over- your knitting! Why do you think I sewed all the time?!!"

What a beautiful post -- left me in tears. What a wonderful and honest vision of parenthood. Thank you. (I'm 32 weeks pregnant with our second, and the tears may be the hormones, but I don't think so. Or rather, the things that get me this time around are these honest portrayals of parenthood that talk about the joys as well as the sorrows, the pain as well as the relief of letting go of your ability to control your child, and what it means to love our children as they are and not as we would wish them to be. When I was pregnant with my son, Mastercard commercials could make me cry -- I'm a little tougher this time around). Thanks again -- and happy birthday, Julia!

Thank you for that beautiful story of love and caring. As I read the story, I thought about the chirpy little girl on 'It's A Purl Man'! I thought at the time that she was a spunky, funny, happy little girl. I plan to comment to "Dances With Wool", as she wrote a story a few months back of her young daughter (teenager, I think) who has epilepsy! What a lucky little girl to have you and the Farmer and what lucky parents to have such a beautiful little Julia!Life is not fair, life just is!

What a LUCKY GIRL Julia is to have you as her Mother! You are an amazing inspiration-even more so with the sharing of such a personal story. ALL best wishes to Julia on her remarkable life and birth day.

Oh my. Kristin, this is an incredible post, one of the few, the kind that will stick with me, among the many, many I have read online. Honestly, I'm not sure what to say and will have to sit with all of this for awhile. The agony of uncertainties you've seen and the joys your daughter brings!What a lucky girl to have you two for parents and vice versa. Happy Birthday, Julia.Thank you, Kristin, your "Farmer", and Julia.p.s. I'm quite jealous of the time you spent with Simmy and her family!

I read your post this morning and by the end I was crying so I had to wait to comment until I could see the screen.Thank you for sharing this story. Julia, you are an incredibly strong young lady. I admire your joy in living, your indomitable spirit and your contagious smile. A very happy birthday to you! May you have many, many more happy birthdays sharing your parents' lives and all the wonderful things that happen on the farm, especially the kitties!Willow on the West Coast

How fortunate you and Julia are!When I was a young child one of my friends and neighbors had a little sister who was born with hydrocephalus. In those long ago days there was nothing that could be done for her condition. She eventually died before her second birthday.

Thank goodness for the wonderful advances in medical science that have allowed us the opportunity to see your adorable daughter's beautiful smile! Happy Birthday and many blessings to Julia and to you.

Thank you Kristin for sharing this insight into your life and the life of your family. For all we are highly educated and think we know lots of stuff about stuff, bringing children into the world puts it all in the shade. Whether we realise it or not at the time, what faith it takes to enter on the birthing of a child and bringing it up to know the world! What is this faith? Is it in ourselves? In immortality? In the human condition? In the child itself? And when the child takes some turn away from what we consider the norm or the expected, more faith is needed along with love and hope and into a world of events and possibilities beyond our imagining. It seems to me that you and The Farmer and Julia have acquitted yourselves well. Faith, hope, love and happiness are well portrayed in your post. So much love is travelling from my house and heart to yours at this minute.

Thank you for a beautiful, hopeful post. I am a lurker but had to comment. We met Dr. Heilman on January 14, 2004, an hour after my daughter was diagnosed with a malignant brain tumor. He operated the next day and we started a journey towards recovery and the future. She is in remission now and a normal 15-year-old. Yes, she has battle scars and some challenges but we are so lucky. In a way, it's a gift to have illness touch your life. It rapidly puts "problems" into perspective and you take nothing for granted.All the best to you and Julia. (And I really enjoy your blog.)

Happy Birthday to Julia. As I read your story tears brimmed in my eyes, not from sadness but joy at what life does bring us. As you said find solace in whatever way you can. Take each day as a challenge and enjoy being in the present. Thank you for sharing your life. Pam

Wow...thank you so much for sharing this with the knitting and stitching community. Both my babies were born healthy, and they are truly joys at 16 and 18, but the teen years bring new reminders that, as you put it, life bring many challenges, and there are many things which we can't control.

I think I'm going to go pick up my needles and some Julia yarn I have somewhere in my stash, in honor of yours and Julia's story, and especially, in honor of Julia's birthday!

Thank you for writing about yourself and about Julia. I cried reading it! I was born with kidney defects--had three "groundbreaking" lifesaving surgeries before I was five. I am now older than my mother was when my folks went through this--and I realize how very hard it must be to watch your child go through all the medical intervention to survive...it was hard for me as the kid. Yet today I am happy and healthy and productive. I've never met you, but I send both you and Julia a big hug on her special day! Thanks for letting us in to share your experience. There's such deep meaning in our stories and experiences...we all have more in common than we think.

What a fantastic entry. I feel you've captured both the agony and the joy we experience as Mothers of children with disabilities. I now work in an early intervention program so I can give to other children what my son was so fortunate to receive. Happy Birthday Julia!Michele

Happy Birthday to Julia and the whole family. I have been a lurker for awhile now, but had to comment. My daughter was born with a heart defect and I can relate to the things youv'e said. Many surgeries, many doctors, but today is 32,happyily married, step-mom to 2 boys and loves life all the time. There are possible more surgeries in the future - as they have found new ways to deal with her defect. You never know when something new can be done medically. I was impressed with Julia's interview with PurlMan. She sounds like a great kid. You and the Farmer should be proud of her. Your also right, when all else fails pick up the needles, etc. I counted cross stitched my way through 10 years. Your in our prayers.Jackie

What an honest post.After reading it I went outside to work on out backyard,pondering all your grace, bravery, courage....and the uncertainties of life. I loved the photo as well and the look on both faces seemed to minic one another,with LOVE!! Hedda

It was a privilege to read this, and I am really quite humbled and in awe of your spirit.It is honest, bold, frank, and gentle.You and your family are an inspiration. Thank you so much, and Happy Birthday Julia.I bet you are out there inspiring other young people.

As the mother of a daughter with a "disability" (she is deaf due to her premature birth) I understand and can sympathize with some of what you wrote. I appreciate you putting into words what can be difficult for me at times. Thank you for sharing the story of your family. It does help to realize that there are others out there going through similar circumstances.

I found your blog through your zipper tutorial and wanted to comment to say thank you, and I found this very touching post. My second baby was born 6 weeks premature and spent not one second in the NICU. Not a day has gone by since his birth that I haven't thought how lucky we are to have both our children.

How interesting that I would read your blog entry just after returning from a three day conference on disability and the arts. I already knew the importance of the work I and the other four members of our access advisory group are doing. The conference underscored it for me and your blog entry put a face on it for me. Julia is as cute as a button! Thanks for sharing her--and your-- story.

Thank you for the reminder that so many of the things that seem difficult are really so small and inconsequential. I needed to read that today (and I owe my dd an apology). Bless you, Julia and The Farmer for sharing your story.

Dear Kristin,thank you for telling us your very personal story.I wish you and your family everything good, I know how near is the step to sickness, I am a physician and slso a mother of three kids,best wishes, Karin from Germany

Thank you for sharing this. I don't often comment on blogs, but your story rang very true for me. Knitting and spinning have been sanity savers for me for over 31 years now, since my son was born with severe spastic quadriplegia. He too, like Julia, is a wonderful person. His ability to deal with his daily hassles certainly put into perspective the important things in life.

What a beautiful story - I am slowly catching up on my bloglines reading... Although my daughter's special needs are different (high functioning autism), they dominate every aspect of our lives. I too, feel that I might not have given myself permission to walk away from the societally mandated rat race if it were not for her. I use knitting to quell my anxiety and keep me calm during high conflict times such as homework hour.

I don't know what to say... I don't know what would be the right words for me either. If I say, I have been there as well, that is not true either because really I have not... I'm living similar life to yours, with different stuff to battle and accept and love and some of your sentences I could have said myself. All the best to Julia and You and the Farmer.

Kristin,I have been reading your blog for awhile, can not remember how I found you, but I did...I decided to go back to some of your earlier posts and read and found this one....I was over 35 when I had my daughter and of course they considered me high risk...but I chose not to have the amnio done, and did not really want the level 2 ultrasound, but did so...Because I had already decided that no matter what, my baby was going to be born, and I did not want any added worries of them giving me a false positive...I knew that no matter what, GOD gave me my baby and if he so chose to give me someone with special needs, then I would deal with that...Even now that my son has some problems and is going to be seeing a neurologist, it is a little upsetting, BUT I know I can make it through and that he is still my son my fun, loving, beautiful little boy...Thank you so very much for sharing your story...It made me realize that I am doing the right things and that by loving every little thing about my children, whether it be a down fall by somes standards or not that they are here and "make the best of it" I also knit and crochet and paint and such for my sanity and relaxation...And I would love for my children to do the same, but if not then they will find what does.

Our son was born by an emergency c-section after a healthy pregnancy for me, I felt great, did aerobics until the week he was born. It never entered my mind that there might be a complication. We waltzed into the hospital, proclaiming to the receptionist, "We're going to have a baby!" Several hours later I was recovering, and Samuel's future was a total unknown. He spent 20 days in the NICU. Like you, we have been very fortunate with his health. That was almost 8 years ago, and I still rejoice at every "normal" baby that is born.

And now your beautiful girl is 13!How wonderful! She may have a few disabilities, but she is so blessed to have a wonderful mom and dad who love her, nurture her abilities and grow along with her. This is a scary time in a lot of ways. Our granddaughter was born after a c-section. All was well, or so we thought - until she was dx'd with autism after a miserable year of first grade. Now she's 11 and looking at middle school next year. We know how to love her and care for her, but it's so much harder to let go when she has to face life's challenges. And of course the worry of what will happen when we're gone. But people with disabilities make a way - because they don't see their disabilities so much as they enhance their abilities. People like Temple Grandin give me hope. As do people like you and your daughter.Hugs,Joan

I too have a disabled child. He is now 34. We have a cattle farm and that is what he does. He helps his dad with the farm. However, we recently had another challenge. He was hit in the knee by a cow, a mother of twins, who was very confused and scared I am sure. But none the less, we have been through extensive knee surgery and now are doing physical therapy daily. There is a long way to go.

I wondered in my early years of motherhood, why me, why my child? Now I know. No one else would have loved him the way I do and no one else would have given up their career to take him to special ed and tutors for years and years. And you know what, I am so glad I did. He is a sweet loving man who is very close to his mom and he takes care of me when I need him. Now I know why it was me and love him with all the love I have, as I do his sister who is perfectly normal. Life goes on and you and I do what we need to do for our children and now my grandchildren. Hang in there and take it one day at a time. God loves you and blesses you with these special children. So we knit and love and do what we can to make them have the best life they can have. Your story touched my heart as well as many others. Thanks for sharing it with us.

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